A couple of years ago I fell down some stairs at work. I caught my toe on the edge of the stairs and fell out over them and landed on my wrist and shoulders as I tried to break the fall. Luckily I didn't break anything though I was very bruised and shaken up afterward. To this day, every time I go down those stairs I feel a little bit nervous. I literally have a physical reaction to something that happened to my body a couple of years before. It's like my body has a memory of it's own.

If that is in fact the case, that the body has a memory, I wonder if it can make the distinction between pain from accident or trauma or illness, and the ongoing moments of pain that it has to endure to stay healthy with diabetes. Does my body "know" that the endless blood tests and pump site insertions and removals are for it's long term good? My mind knows and it helps me override the apprehension I feel that second before the plunger clicks and the fresh quick set is inserted into me. But still I find myself waiting to the very last possible moment to change out my sites, resisting the insistent beeping of my pump reminding me that soon I'll be out of insulin. I know that this is in great part because I simply want to avoid the pain, however minor, the procedure inevitably involves. Which doesn't make sense on it's face. It doesn't make sense to my mind, that's for sure. Snip, snap, take out the old site, rip it out quickly and the immediate pain is gone soon thereafter. It itches a bit, sometimes it bleeds, but it's over in a few minutes. Same thing with putting the new quick set in, one, two, three and click it's in, burning a bit, sometimes stinging if the insulin is too cold but over in a flash also. What's the big deal? It's not so terrible yet I hate it just the same. I can't help but wonder if some of this is my body memory weighing in where it can. My mind may understand, but my body just reacts to the pain and tries, however futile that might be in this case, to avoid it in the future.

In my last post I spoke of a momentum I've been feeling around the idea of better design in the medical realm. The more I think about it, the more I think that something's afoot in the greater world of medicine and design. Something's definitely happening and I'm pretty excited about it to say the least.

Consider what the architect Michael Graves said of his first impressions of the hospital he found himself in after he became paralyzed and wheel chair bound in this Metropolis article written by John Hockenberry: "He likes to tell the story about how during the worst days of pain and uncertainty he pleaded to anyone who would listen not to let him die amid so much ugliness. After a lifetime of seeking beauty in everything he designed and obsessively making sure every detail in his physical space was selected to be purposeful and beautiful, he was suddenly trapped in a world of mundane medical objects. “Everything was ugly,” he says. “Nothing was designed. It seemed as though the makers of these objects never had to use them. There was no color, no style; nothing about any of the objects said that a human had made them. It was outrageous.” Graves said he once had his doctor come into his hospital bathroom, where he was trying to shave from his wheelchair: “ ‘Who designed these bathrooms?’ I asked him. He said, ‘Experts.’ I said, ‘Oh, really,’ and I had him sit down and look at himself in the mirror, which was too high, and then turn on the water, which was out of reach. It took him two seconds to get it." Graves, at another point in the article, articulates beautifully something that gets to the heart of the issue of design in the medical realm: "People who become disabled have to radically redesign their outlook about the physical world. They redesign their sense of privacy and their sense of independence. Yet in the products they have to use, design has abandoned them."

Amen.

Or consider what Virginia Postrel so beautifully articulated in this recent post (where she also kindly linked to a recent post on aiming for grace): "The more I think about the sorry state of health care aesthetics, the more I think part of the problem is that we have an "acute care" model of medicine in a world where chronic diseases are increasingly the rule. If you only go to the doctor occasionally, you won't care nearly as much about how things look as you will if you're spending a large part of your life in clinics of various sorts. The same is true of medical devices. A diabetic who uses a pump all the time for life will benefit far more from something that looks good than someone who has a one-time, or even short-term, encounter with some kind of medical gizmo." So insightfully put! Design matters more when you have to interact more with designed stuff. Especially when you have it interact with it 24/7. Especially when you have to use the stuff to live. Especially when you have no choice.

Amen again.

What occurs to me is that all this talk, this momentum if you will, is a result of a number of interesting, converging factors beyond the simple conversation about design. The first factor, and in my mind the biggest, is an idea I've touched on before after reading Jill Sklar's great book. When you look at the long history of human life and disease, the state of chronic illness is really a very new thing. Before the last century, people pretty much got sick and then they died. These were the times before antibiotics, insulin, vaccines, widespread understanding of hygene. These were most certainly the times before the internet or the human genome project. In the context of human history, the last 100 or so years are but a blip, and the state of living a life with a chronic illness is really a thoroughly modern phenomenon. It's an unprecedented, revolutionary thing. Science has made this modern state possible, but as is often the case with life altering innovation or breakthrough, the cultural institutions of the society, the technology surrounding the science and the realm of design, all follow behind.

The idea and experience of chronic illness is "new" when looking at the big picture of human history. Yet, as Virginia Postrel mentioned in her post, we live in a time where living life with a chronic illness or condition is becoming more commonplace. Again, thanks to advances in medicine and science, we are living longer than ever before in history, meaning that most people will be managing some kind of health condition at some point in their lives. An article by Thomas Goetz from yesterday's NY Times magazine put it perfectly, "As we learn more about disease and are able to identify it earlier, more and more Americans will fall under the rubric of 'patient'". Or as a woman quoted in that same article says, "Pretty much everybody I know over 45 has some kind of medical condition. Some people have had cataracts surgery, or they have high blood pressure, or high cholesterol or diabetes. Everyone has something. And if everyone has something, that really levels the playing field." The sheer weight and volume of more people living in that state of being, also contributes to a new awareness of the issues people with chronic illnesses face. I would posit that the result of this fact is an emerging awareness, a new sense of urgency and most importantly, a higher level of demand for a better experience around life with chronic illness.

Another key factor in this possible new momentum is of course the internet. At it's best the internet connects people who are sharing an experience such as chronic illness, allows them to share information, insight and feelings, and over time, amplifies their voice in ways never before possible. I know that's happened to me personally in writing this blog. At first it was such a revelation and joy to find others who knew the strange world of diabetes that I inhabited. Then over time, I found my voice change and become stronger as I not only understood that I wasn't alone in my journey but that my feelings and ideas about that journey were valid and true. My view of my experience became more real and as it did, my ability to analyze it and express it with some distance and clear insight got greater. For years I was stuck in the isolated and singular place of being one person with a chronic illness, lonely and struggling to fit in to a "normal" world I was no longer a part of. Thanks to the internet and blogging, I no longer feel alone and I now have a new philosophy about normalcy. A new normalcy. My idea of this new normalcy is defined by being whole with disease, rather than feeling less than whole because of it. I can't help but think that this personal journey is happening all over the internet, between blogs and forums like the diabetes OC, tudiabetes or diabetes daily, and media channels like dLife, and open source medical information websites like PatientsLikeMe, to name just a few examples. All these isolated, single individuals experiencing chronic illness, disease and physical limitations, are now starting to collectively add up to an amplified picture, source of insight and in the end, a much harder voice to ignore. It's definitely getting louder out there!

Given all of these factors, the relative "newness" of the chronic illness state in society, the fact that more e people are living in this state of chronic illness thanks to the advances in medicine and science and the compounding, amplifying ability of the internet, it feels like times just might be beginning to change. This convergence of factors might mean that the experience of disease will be considered as important as the science of it. It might mean that a new definition of normalcy can emerge in the process of this evolution. The momentum around new normalcy and better design and patient voice feels real to me. It feels hopeful and progressive to me. It feels like there's certainly a lot more noisy conversation on the way. And that can only be good in the long run.

Don't you love it when you start to see some gaining momentum around an idea you really care about. Or at least the fact that there are other people out there who feel the same way you do. And they have a clear and articulate voice. And they happen to write for a big, national magazine. Well I love it, that's for sure! 3 huge, loud, happy cheers for Virginia Postrel's latest column, the art of healing at the atlantic. Yes, yes, yes, "aesthetics can make for happier, and healthier patients". Yes, design does matter. My favorite line in the whole amazing, smart article is, "why assume good medicine must come with bad design?" Why indeed. "If you have a choice and you can be in a place full of light, where there’s beautiful art that your eyes can rove over and feel comfort from—which would be a better experience, assuming they both are the same [medically]? And why don’t we think people deserve that?" Exactly! Who deserves better design more than people who have to live with medical treatment and procedures to save or sustain their lives? We deserve better design, because we have to show up for treatment to live. We have to be there, so why not have it be as pleasant as possible on all levels?

The other morning, just before I was fully awake, I noticed that the spot on my hip where I often put my sites was itchy. Even though I wasn't fully conscious, I found myself going through a little mental inventory before I let myself scratch the itch. Is that where my site is? When did I last change it out? Don't scratch it until you're totally sure. After the couple of seconds it took to scroll through those questions, I remembered that indeed, I had changed my site out the night before and the place that was itching was the old site. Check, I could scratch the itch without fear of disturbing the site or worry that an infection was starting there. Check, I could scratch the itch and roll over for a little more snooze time.

It struck me later when I was actually awake, that diabetes is so much about these little details for me. For some reason I notice the textural, granular things about the physical experience of diabetes, often more than the big stuff. These nuances, the strange bits and pieces that make up daily life with all the paraphenalia I need to use to survive, are what catch my attention at the strangest, most unexpected moments. Skin meeting sticky adhesive tape, callouses meeting dull metal, sparkles in my vision when I'm low, numbness in my tongue when I'm really low. After so many years, these physical sensations exist in a strange place within my consciousness, certainly within my awareness, but also less distinct because they're so persistant in their daily presence. They demand my attention and yet their demands are so commonplace that the volume is also subdued. These small details have become so quiet and yet somehow, so much more noticable too.

I found this video of jill bolte taylor absolutely amazing and inspiring. It's a pitch perfect example of a person describing a physical trauma (in this case a stroke) from the inside out. Dr. Taylor also happens to be a neuroanatomist, so she's in a unique position to share her experience with an added level of technical insight and context. But it's her unbelievably humane and moving presentation of the story itself that really brought me to tears. I was spellbound and yet surprisingly comforted too.

One small warning for the squeamish. There's a short portion of the presentation where she handles an actual brain. It's a little creepy but it doesn't last for long.

I owe Amy a big thank you for her kind review of my new little book aiming for grace: 20 things I know about diabetes. To be honest, I'm feeling a bit funny about even talking about it. More than anything, making this series of posts into a self published book has been a terrific exercise, a healing process, to be honest. The fact that there's a book that people can have if they'd like, is a very nice result of a personal exercise that's been helpful and positive to me as an individual. Making something from nothing has always really helped me for some reason. A piece of art, a story, a blog post, a book. Taking an idea or feeling from inside and pushing it outward into a real form that I can see and feel has always made sense to me. It's always made hard things less difficult to deal with.

That was the core idea behind the aiming for grace exercise I did a couple of years ago to commemorate my 20th anniversary of living with diabetes. It was so very helpful, 20 posts over a 2 week period. Surprises and revelations that I hadn't expected, confirmation and celebration of what I'd learned so far. It helped so much to see the ideas rather than just think them. Doing the exercise did exactly what I had hoped it would by creating a milestone and documentation of all that I knew so far. It honored my journey for myself.

After doing the exercise on my blog, I decided to make 10 one-off copies and have them bound in a book format to give to my family and friends and doctors, to acknowledge their help in my journey and to thank them for their support. There was something so amazing about take the idea further, from inside my head, onto the blog with it's virtual format I could see, to a book format I could touch and feel. The process somehow made the ideas feel more real to me and just as importantly, it gave the people who received the book a chance to interact with the ideas in a more intimate and personal way. I don't know what it is about books, but there's something about the weight and feel of a story in your hands, physically revealed with each turn of the page, each picture and phrase. Everyone, to the person, commented on how they had learned something more about diabetes because of the book, a result quite frankly I hadn't expected. These were people who knew the disease well or at the very least, knew me well, and yet because of the format, were able to interact and understand diabetes at a different level. Who knew?

Since I went through the exercise of making the one off books, some amazing technology has come to be. In the last couple of years the ability to self publish has become possible in unprecedented and relatively affordable ways. Thanks to services like Blurb, iPhoto book, and Lulu to name a few, it's fairly easy now to publish one's own content in a beautiful, professional way. Each company has a interface that makes it possible to drop your content into their format and then for a price, based on size, number of pages, and whether it's hard or soft cover, they will produce the book for you. Simple as that.

So what's happened is that the insight from my experience with making the aiming for grace exercise into a book has combined with this happy new technology of self publishing and voila, my little book was born. I kept thinking about how people internalized the ideas differently in a book format and I thought that other people might like to have the choice to see the story that way too. All the original content still lives on the site and can be read anytime here. What's fun is that now if someone wants to have it in a swell book format, they can have it that way too.

So much of being understood and heard is determined by how an idea is presented. "Know your audience" is one of the first rules of good presentation. With that idea in mind, I drew this silly chart as a way I might communicate to my doctor or nurse about how I was feeling about my diabetes. There are so many factors that go into the answer to that question that it's hard to explain succinctly and with clarity at a short doctors appointment or phone call. When I see my doctor we have only so much time to talk. We review my latest A1C, discuss lows and highs, check my feet, you know, the usual stuff. If we have any time left after going over all my numbers, my doctor will sometimes ask how I'm feeling about my diabetes overall. But because it's at the end of our visit, there's never much time to go into any depth to really answer his question. I usually say something like "I'm ok" or "this is frustrating but I can handle it", and then we're done and out I go back into the world.

But I know from personal experience how much mood, attitude and feelings play in my approach to my diabetes management. Feelings have real impact yet they're not quantifiable or precise or particular like a reading from a blood test or an A1C. So much of my approach around diabetes is about balancing, about landing somewhere on a scale between 2 places, 2 opposites, 2 variables. This drawing was a beginning attempt to capture how that might look in a picture rather than as a vague idea. If understanding has to do with presentation, would my audience, those amazing medical, clinical, data focused partners in my care, consider my feelings and attitude as a part of my overall control assessment differently if I shared it with them this way? Since my attitude and mood has such direct impact on my diabetes control, why shouldn't it be expressed in a language and format that makes sense to the medical world I have to interact with? And most importantly, would this added clarity around such a key factor in care mean that we would both have more information to act on? I think it'd be interesting to bring something like this to my next doctor's visit. I like the idea of interjecting feeling and attitude into the management equation to broaden the conversation beyond the usual clinical, numerical data points. At the end of the day, feedback, context, information, clarity and understanding can only help. And a little more help is always good.

This is the aesthetic of diabetes. Black, grey, blue for color. Hard plastic surfaces, nylon fabric for bags, clear transparent screens for data interface. Big digitized numbers, small point type for information, big buttons with white circles for text and blunt, graphic arrows. Blocky, thick rectangles and squares, semi-streamlined curves and chunky forms and shapes and dimensions. Translucent tubing and packaging, glowing backlit lighting and lot's and lots and lot's of numbers. Piles of plastic. Tons of paper boxes. These are our pictures from the diabetes made visible pool that show the story of what we live and interact with everyday.